BATON ROUGE — When Sydney Sanders learned she was pregnant, she felt the same mix of joy and nervousness many first-time mothers do. But at 13 weeks, her pregnancy journey took a turn that would change everything.
Doctors told her the baby would be born with Trisomy 21, or Down syndrome. As a neonatal ICU nurse, Sydney was no stranger to fragile newborns. Still, this was her own child, and with the diagnosis came a cascade of worries.
“It wasn’t just about the Down syndrome diagnosis,” Sydney said. “It was the heart conditions, a whole slew of things … just the worry, the uncertainties, and preparing ourselves.”
Ivy’s Birth and First Challenges
On September 11, 2023, Sydney gave birth to her daughter, Ivy, at 37 weeks. The newborn immediately faced serious medical challenges: Down syndrome, a complete atrioventricular canal defect, and Tetralogy of Fallot, a rare heart condition that affects blood flow.
Ivy spent her first seven weeks in the NICU at Woman’s Hospital in Baton Rouge, relying on oxygen and feeding support. On October 12, she underwent her first surgery to place a G-tube, helping her get the nutrition she needed.
By October 27, after 46 days in the hospital, Ivy was discharged. She was smiling, stable, and breathing on her own.
For several weeks, life was calm. But Sydney had a gut feeling something wasn’t right.
A Sudden Turn
In December, Sydney rushed Ivy to the ER in Baton Rouge after her daughter’s oxygen levels suddenly plunged during what’s known as a cyanotic or “tet spell”, episodes common in babies with Tetralogy of Fallot.
“I just had this feeling,” Sydney recalled. “I brought her to the ER myself, and as soon as we got to the back, she had her first tet spell.”
Doctors confirmed Ivy had respiratory syncytial virus, a dangerous infection for infants with heart conditions. The virus triggered more frequent tet spells, and Ivy was admitted to the PICU.
Sydney recalls the growing fear.
“As a nurse, I knew RSV gets worse before it gets better … and the fear of being only on maybe day one or two would look different in the next few days.”
Doctors recommended Ivy be transferred to Ochsner Medical Center in New Orleans, home to her heart surgeon and one of only two hospitals in Louisiana equipped for pediatric cardiac interventions. Sydney trusted the team and agreed.
The Transfer That Changed Everything
Sydney says she received a call from the transport team once they arrived in New Orleans, reporting that Ivy’s vitals were stable. But when she saw Ivy again at Ochsner, her daughter was unrecognizable.
“She was a completely different baby,” Sydney said. “Crying but with no tears, gasping for air. Her heart rate was above 200. She had a fever over 101. I can remember walking into the room and immediately realizing that my baby I had just left not even an hour ago had completely changed.”
Two days later, doctors told Sydney that Ivy had become septic. She was placed on ECMO, a life-support machine that takes over the heart and lung functions. What followed was 150 days of setbacks, complications, and painful uncertainty.
A Downward Spiral
Ivy endured one crisis after another. She had DIC, disseminated intravascular coagulation, where the body bleeds and clots at the same time.
“She was bleeding and forming clots at the same time,” Sydney recalled. Ivy’s arms and legs also began turning purple from lack of oxygen.
“I can remember thinking at the end of the day, if Ivy survives this and has none of her extremities, what quality of life is that? I asked nurses about different tests … and I can just remember no answers being given. As the days continued, I felt like those concerns weren’t a big deal.”
Ivy was critical and not improving when a routine MRI to assess brain damage went terribly wrong. Sydney says Ivy was given an adult dosage of contrast instead of an infant’s.
“They made it seem like not an individual error, but a system error,” Sydney said, explaining the hospital blamed EPIC, its charting system, for not flagging the dosage. She says she still doesn’t know whether that error caused Ivy’s brain injury.
Sydney says she began to question whether her daughter was getting the care she needed, or whether Ivy’s conditions, particularly her Down syndrome, shaped the medical team’s decisions.
“I think that having Down syndrome and heart abnormalities put her at a disadvantage,” Sydney said. “It was as if they’d already decided what quality of life she would have and whether she was worthy to receive treatment.”
Pushing for a Second Opinion
By late February, Sydney and her family were asking for a second opinion. They wanted another medical team to review Ivy’s complicated case.
“I was just trying to get a second opinion, a right that every parent should have,” she said. “I didn’t think anything of it, and it was at that time that I truly saw this shift in attitudes.”
Sydney says she felt resistance, not just toward Ivy’s care, but toward her and her family.
“Once I asked for the second opinion, you could feel the tension in the unit,” she recalled. “Big updates were being given to family when I wasn’t in the room. Conversations grew cold. My concerns about infections, fevers, and neurological issues weren’t being addressed.”
Then, Ivy developed osteomyelitis, bone infections in both legs, along with new fevers and swelling. Sydney believes the infections should have been caught earlier.
“I kept voicing our concerns that this isn’t normal for Ivy. She had fluid collecting behind the knees, her toes were blistering with pus — a clear sign of infection. Infectious disease specialists said it was just a drug-related fever. But Ivy had been on most of the medications since birth and had never had a fever like this before.”
A Battle Beyond the Bedside
Sydney no longer found herself just fighting for her daughter’s health. She was now fighting for a voice in her care.
“I don’t believe Ivy came in complex or difficult to treat,” she said. “I believe it was due to mistakes or misdiagnoses that led Ivy to having more issues than what she initially had. The brain injury, the liver issues, the osteomyelitis … Ivy never had those prior to coming to Ochsner.”
UWK reached out to Ochsner for comment on the concerns raised in our investigation. As of our deadline, the hospital had not responded.
Leaving the NICU, Sydney thought she and Ivy had turned a corner. Instead, she found herself in a battle she never expected, not just for Ivy’s life, but for the right to make sure her daughter received the best possible care.
In Part II of this UWK investigation, which will premiere October 5, we’ll examine the medical decisions made during Ivy’s treatment, the accountability questions raised by her family, and what her case reveals about how fragile patients are treated in Louisiana’s health care system.
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